Friday, May 8, 2015

Recovery, Normality and Other Myths.

With Mother's day tomorrow my thoughts return again to that day nine years ago, the last day our family's life was to be the same as it always had been.

The Monday after was to be the day an MRI found my eighteen year old son's 5cm brain tumour. He was to have surgery the next day and I had no idea I would be hundreds of miles from home and would not return  again for weeks.
Of course the ICU, comas, paralysis, infections, weeks of rehab and the steep learning curve into the world of Neurosurgery and brain function, pulled the rug out from under my life and threw me into a completely new and horrendous place.

Once we were finally home , even though I knew things would be difficult and different, I at least felt I might feel a little more 'normal' or 'at home', but this just didn't happen. I realized our lives were like a side show ride, going around and waiting and expecting we would just jump back on. You sit there watching your old life go around and are puzzled as to why you can't just jump back on, at least to a little of it. The fact that my other sons and husband still rode their rides made things worse and pretty soon they started falling off too.

It wasn't even that I wanted my life back, it was more that I wanted to feel like I was home. I wanted to feel some 'normal'. But it was like all your favourite clothes didn't fit anymore and you couldn't work out why. Home and our lives were a strange, alien place. Give it a bit more time I thought, things will improve.
Six months and I was still puzzled. Twelve months and I was still puzzled. I'm not getting over this, I'm not getting used to this, what's wrong with me, I wondered.
I remember when I started looking for answers. The first article I read was was Kurt's story on brain tumour.net. Kurt wrote of his experience with a tumour twenty years ago at the age of thirteen. He wrote so clearly as if it happened yesterday. This puzzled me. 'Wow, why is he writing about something that happened twenty years ago?' I wondered. He wrote about time, lots of it, change , adjustment and acceptance. I'd had a year, what was my problem?



I didn't have a light bulb moment.
The light bulb flickered feebly on, brightening ever so slowly for me. I read more.
As a mum, your desire is to enable success for your children, to see them independent and happy. You realize you have lots of imbedded expectations of your children. Resetting your ideas of happiness, success and achievement takes a lot of time. Naturally I wanted to help my son reenter life in any way possible, but as my 'helping' failed I felt like I'd failed him too. Nothing was going the way I wanted it to. He was not going to be able to drive, to work, his social life was gone and at a time when life should be opening up, for him it was closing down.

So began the long path to acceptance. While I would never give up on my son, I certainly had to let go. This wasn't about me.

Acceptance brings with it reevaluation, peace, a realization that life's joys, achievements and successes aren't what we might have thought they were.
No, life is never going to be the 'normal' one it once was, but it's a gift. The last nine years have given us a gifts I wouldn't change for anything.


http://www.lemonsizedtumour.com.au/

.....for our full story.